Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jul 15.
doi: 10.1007/s00246-025-03944-z. Online ahead of print.

Assessment of Early Development in Congenital Heart Disease Using a Novel Caregiver Rating Method

H Gerry Taylor  1   2 , Jessica Quach  3 , Adrien M Winning  3   4 , Lindsay Smith  3 , Carl Backes Jr  3   4 , Omar Khalid  3   4 , Seth Warschausky  5 , Patricia Berglund  6 , Renee Lajiness-O'Neill  5   7
Affiliations

Assessment of Early Development in Congenital Heart Disease Using a Novel Caregiver Rating Method

H Gerry Taylor et al. Pediatr Cardiol. .

Abstract

Early identification of the infants with critical congenital heart disease (CCHD) exhibiting developmental delays would allow for timely interventions to reduce adverse longer-term consequences. Web-based caregiver assessments of developmental milestones complement direct testing as a means for identifying delays outside of the clinic setting. The purpose of this study was to evaluate the validity of a recently developed caregiver rating of early development, the PediaTrac™, as an alternative to ratings of developmental milestones in a sample of infants and toddlers with CCHD. The PediaTrac, along with ratings of developmental milestones, on the Ages and Stages Questionnaire, 3rd Edition (ASQ-3), were administered to caregivers of 45 infants and toddlers with CCHD ages 2 to 18 months. PediaTrac ratings were analyzed using item response theory modeling to obtain scores reflecting skill levels in the motor and social-communication-cognition domains. Validity was examined by comparing scores to those for a reference group of term-born infants/toddlers assessed in a prior study and to delays in milestones on the ASQ-3 and medical and sociodemographic risk factors. Motor scores were lower than expected for the CCHD sample relative to term reference group, t(44) = - 3.269, p = 0.002, indicating a high rate of motor deficits (31%). Although the CCHD sample did not differ from the reference group in the social-communication-cognition domain, lower scores in one or both domains were associated with delayed milestones on the ASQ-3, longer length of hospitalizations, and single ventricle physiology. Findings confirm delays in motor development in infants and toddlers with CCHD and support PediaTrac as a valid alternative to milestone-based caregiver screening of early development in this population.

Keywords: Assessment; Congenital heart disease; Infant development.

PubMed Disclaimer

Conflict of interest statement

Declarations. Competing Interests: Renee Lajiness-O’Neill is the owner and creator of the PediaTrac tool. She, along with authors H. Gerry Taylor, Seth Warschausky, and Patricia Berglund, have received grant funds through their institutions to apply this assessment and evaluate its reliability and validity. The other authors have no competing interests to declare. Ethical Approval: Approval was obtained from the ethics committee of Nationwide Children’s Hospital. The procedures used in the study adhere to the tenets of the Declaration of Helsinki. Consent to Participate: Informed consent was obtained from legal guardians.

References

    1. Cassidy AR, Ilardi D, Bowen SR et al (2018) Congenital heart disease: a primer for the pediatric neuropsychologist. Child Neuropsychol 24(7):859–902. https://doi.org/10.1080/09297049.2017.1373758 - DOI - PubMed
    1. Marelli AJ, Ionescu-Ittu R, Mackie AS, Guo L, Dendukuri N, Kaouache M (2014) Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 130(9):749–756. https://doi.org/10.1161/CIRCULATIONAHA.113.008396 - DOI - PubMed
    1. Abda A, Bolduc ME, Tsimicalis A, Rennick J, Vatcher D, Brossard-Racine M (2019) Psychosocial outcomes of children and adolescents with severe congenital heart defect: a systematic review and meta-analysis. J Pediatr Psychol 44(4):463–477. https://doi.org/10.1093/jpepsy/jsy085 - DOI - PubMed
    1. Shillingford AJ, Glanzman MM, Ittenbach RF, Clancy RR, Gaynor JW, Wernovsky G (2008) Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 121(4):e759–e767. https://doi.org/10.1542/peds.2007-1066 - DOI - PubMed
    1. Brosig CL, Bear L, Allen S et al (2017) Preschool neurodevelopmental outcomes in children with congenital heart disease. J Pediatr 183:80–86.e1. https://doi.org/10.1016/j.jpeds.2016.12.044 - DOI - PubMed - PMC

LinkOut - more resources